Tag Archives: disability

A Million More, and Counting

Posted on May 12, 2022 by Jennie Spotila

Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , | 13 Comments

Pandemic Low

Posted on January 18, 2022 by Jennie Spotila

I hit a new pandemic low last week. CDC Director Walensky’s comments about the “encouraging” news that most vaccinated people dying of COVID had multiple comorbidities was the catalyst (see my op ed in the Philadelphia Inquirer), but my despair … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , | 15 Comments

#MillionsMissing Book Review: A Still Life

Posted on May 12, 2021 by Jennie Spotila

Today is #MillionsMissing, a day to raise awareness and make people with ME visible to the world. As part of the event, people with ME are sharing their stories on social media but instead of sharing mine I’m going to … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , , | 2 Comments

I Want To Scream

Posted on October 14, 2020 by Jennie Spotila

I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , | 37 Comments

How Pandemic Response Measures Harm People With Disabilities

Posted on September 7, 2020 by Jennie Spotila

The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , | 10 Comments

A New Year (With Cake)

Posted on January 2, 2020 by Jennie Spotila

In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What … Continue reading →

Posted in Occupying | Tagged , , , , , , | 17 Comments

#MillionsMissing 2019

Posted on May 11, 2019 by Jennie Spotila

We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , | 16 Comments

The Best Holiday Ever

Posted on November 23, 2018 by Jennie Spotila

Getting a puppy was not in the plan. My husband and I already had a dog (Fargo) and a cat (Lucas). The plan was for my parents to pick out a dog, and I just went along to help since … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , | 20 Comments

After The Afflicted Freak Show

Posted on August 21, 2018 by Jennie Spotila

Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , | 18 Comments

Better Late Than Not At All

Posted on November 23, 2017 by Jennie Spotila

Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading →

Posted in Occupying, Uncategorized | Tagged , , , , , , , , , , , , , , | 16 Comments